Trisomy 18 - Laveen,AZ

S.,
I went throught the EXCACT samething and I am proud to say my son is healthy and happy and born on Valentines Day 2005 but those few weeks in between my doctor telling me and until I could get in to have the special ultrasound done that detects trisomy 18 , I was a mess. But the few things I did learn was chances are you do not have it. For some reason this test's show's up positve for some reason when 90% women do not have it. Now those are good odd's... But you have to go have this test done, well you don't have too but it will ease your mind.
And if you do you DO NOT have to terminate, you can go full term but chances of survial proir to delivery are slim and most babies do not survive the first year, I am just being honest so you know. I didn't have anyone, I went through it all alone, I didn't even tell my husband until the day before the test because we both didn't need to worry and there was nothhing he could do and the final decission on what to do was up to me.... But you do not have to make ANY decission's right now, just relax, do not read up on trisomy 18. (it will break your heart) and try to have the ultrasound done ASAP. There is genetic testing site at 92nd and shea at scottsdale hospital, that is where I went. They were great!!!! The ultrasound will look for genetic markers that are noticable on this higher ultrasound.
I pray to God you don't have this. And if you don't, when all this is over go to the Trisomy 18 website and join. Help other's that do have this or that are going through what we did.
And if you have ANY question's PLEASE CALL ME, I went through this and I am nurse, so I am here if you have any question's, concern's or just want to talk. Home-###-###-####,
cell ###-###-####.
When do you go in for your test?? Let me know how it all go's and I will keep you in my prayer's.

BIG HUG'S
A.

I do know a few people that have positives to the test and nothing was actually wrong with their babies. I think that you have to do what you and your husband feel is best and put the doctors opinions second. Hopefully, you are religous people so you have your faith to rely on during this difficult time. God Bless!

Try not to worry. The AFP test has an extremely high false positive rate. I went through being told that my baby might have Downs Syndrome while pregnant with my now healthy 7 year old daughter. I went through a ton of stress and worry before the amnio so I know how you feel. Really the only thing you can do is get the amnio as soon as possible and in the meantime try to remain optimistic. I'm sure you'll find a long list of people responding to your question with similar false positive experiences. Good Luck!

My best friend just had that happen to her. doctors told her,her baby would have downs syndrome or be very deform, the doctors also told her to terminate the pregnant. She didnt do it. through her whole pregnant doctor kept tell her, her baby wouldn't live through childbirth. THis was her first pregnant. She got awhole of me and we set up a pray line, we got awhole of everybody we would think of,every one on our emails and advice everyone to pray and tell there friend. God really works great. Her baby was born this Aug 23. and was perfect. 7 lbs 2 oz. 20 1/2 inch. The doctors has ran every test possbily. She the baby is very health. If you would like I can ask her to email you. just let me know. My email is ____@____.com

I too know that the AFP is not a good indicator. If I remember right, it has more than a 20% chance of being wrong. I have a friend whose AFP results showed strong indications of downs syndrome and her baby ended up not having it. I will say a prayer for your and your baby's health. Good luck to you.

Hello S.,
Once I had everything in one,13+18+21, my pregnancy was terminated, the child would not live for sure, so many things were wrong like US ( at 13 wks pregnancy), tests, amnio was the final result to tell us to terminate.
Amnio is the best to find out but If your ultra-sounds was good, I would not worry. My next pregnancy was like yours and because US was good, I did not do amnio. I had very healthy baby.
Good luck to you.

After my AFP test, my doctor called and told me that my chances of having a child with DownsSyndrome was 1 in 23, and for my age it should have been 1 in 2036! He too recommended I terminate the pregnancy... blah blah blah. I heard nothing after that. I had an amnio a few weeks later and when the results came back - NEGATIVE! Blood tests, no matter how much good they seem, often have false positives or negatives. Don't take what your doc. says as gospel! Don't try to make any decisions now, just relax (I know, hard to do!). You'll feel TERRIBLE if you decide now that if the results are postive you'll terminate the pregnancy, and then find out that the results are actually negative. You'll feel awful thinking, "I maybe would have aborted you!" I had to come to an understanding with God. I looked up abortion online, looked at anti-abortion websites, too, and said, "Okay God, no matter how this child turns out, I WILL NOT get an abortion." She was born 4 months later PERFECTLY NORMAL! She is now a healthy almost 2 year old! I'll be praying for you!

Did you lose the other kid due to the same issue? I had to get tested for both since I had one miscarriage before my first son and then one miscarriage last year. My first son got dx with autism at age 2. But he is mainly speech delayed and didn't have the eye contact and he constantly lined up objects. He is doing a lot better but still doesn't ask for what he wants nor is he potty trained at 3.5 y.o. For the 4th pregnancy, I ended up taking progesterone pills this year and the results were negative and I have a healthy baby boy. He did have a bit of jaundice that went away after 2 days. He did have some uriatic crystals (blood in urine) which went away after supplementing with formula. His left testicle is undescended. Both hospital pediatrician and his regular pediatrician has stated that it could still descend within 6-9 months. However his pediatrician did refer us to Pediatric Urology Association near Banner Desert Hospital. We met with the doc there and he said to come back in 6 months. If it hasn't descended, then they'd do surgery..not wait a year or two years like in the old days. We're hoping it descends so we don't have to worry about that.

Oh yeah, a friend told me her friend terminated a baby because of missing arm. I think that's related to Trisomy 18..not sure. But she told me she wouldn't do that because she's had 3 miscarriages in 1 year back in 2004.

Plus I've had another friend who told me her test results came back positive and well her 3 year old daughter wouldn't be alive today if it was true.

So it's a hard decision that only you and your husband can decide.

Good Luck!

I have not been in your shoes in terms of my pregnancies, but I did work for a laboratory for 3 years doing genetic testing. As far as I know the AFP is not the best indicator that there is something wrong. They take into account the AFP, ultrasound findings, and amniocentesis, in addition to your age and history to determine the level or risk. Are you being sent to a perinatologist? They will likely do blood studies on you and your husband, as well as an amniocentesis to rule out Trisomy 18. Your history of a miscarriage at 18 weeks is probably worrisome to the doctor, but I would wait for confirmation on ultrasound and amnio before you worry. I have seen abnormal AFP's that have normal amnios quite frequently with no problems on birth, but you need to prepare yourself that your baby may have Trisomy 18. Did they do studies on the baby you lost at 18 weeks? Usually they will ask to do genetic studies to rule out problems. The fact that you have a daughter is promising :0)

I know this must be a very hard time for you now not knowing what will happen. I cannot imagine losing a baby at 18 weeks. I cannot tell you what to do, but I will tell you that I believe letting nature take care of things is the best thing to do emotionally. Medical tests have been wrong before and I would hate to see you go through the anguish of ending your pregnancy based on medical testing. If your child does have trisomy 18 and makes it to birth, he or she will likely not make it more than a few hours to a few days, but I can guarantee that you will feel best about giving your baby the chance to live and letting God decide the length of his or her life. I know this because of people that I know who have gone through pregnancies when told to abort and people who have not. I hope you can find some comfort in this, and I will pray for you that you will find peace in this situation.
Be blessed,
K.

I think that going to a specialist is a good idea but chances are, the blood test is wrong. Another thing... I don't know why doctors are so quick to try to get women to abort babies who aren't "perfect". I have a 19 year old daughter who was born with complex heart defects and has had a very difficult life. I have given up a lot just to take care of her but do you know what? She has been the biggest blessing of my life. She is happy and loves life. Everyone who meets her falls in love with her. She is 19 but 6 or 7 developmentally. What if I had known at 18 weeks along that she was going to need 5 heart surgeries, suffer strokes and need special care all her life? What if the specialists had pushed me to abort her? The world would have missed out on having such a special spirit - an angel, if you will, on it.

If you would like to "meet" her, go to http://www.angelfire.com/oh4/jensenland/ and click on "Jessica's journey with CHD". There is a brief story about her life up until 2001. I keep a blog now and post updates and photos of her and my family at http://F..blogspot.com/

I hope everything goes well with your next appointment. I pray that everything turns out fine.

Hi S., I was told during my pregnancy the same things you are being told...after genetic counseling ect we decided that we would deal with whatever came our way...A Very Healthy baby boy and that was 3yrs ago. Thank God! This is just my personal experience. I hope all goes well. If you would like to talk more please email me at ____@____.com---V.